There are these wind storms that sometimes come up when we’re on the island that are truly awesome. The trees lean as though bearing the burden the gusts put on them will bring them to the ground. Waves crash against our island and the ones scattered around us in the most painting worthy ways, warning us to not so much as attempt crossing the lake. Our belongings have to be brought inside, and all of the windows and doors must be shut up for the duration of the storm. If you have to walk across the island for any reason, you feel like your feet could be blown out from under you at any moment. Mother Nature is offering a beautifully sung reminder that she is stronger than years of root growth, any boat or captain’s skill, the screens protecting the cabins, and your footing.
I’m laying here listening to one of these storms. The wind is making it too cold for me to do much other than burrow deeper into my blankets and get more lost in my thoughts. Watching the trees submit to the power of the gale and the way that the current in the lake is moving in what seems to be three or four different directions has me contemplating the way that a flare stages its attack on my body. My brain has built up this idea that it is shockingly similar–this storm and the cycles of remission and flare.
Yesterday there was a beautiful calm. The water was a perfect glass. Only the occasional breeze made itself known long enough to keep the heat from becoming overwhelming. My body sometimes settles into this same calm. These are the stretches when my pain stays at a steady six. There’s no blood in my stool. No intestinal blockages. I only double over if I eat something I shouldn’t, and really that’s on me. These are the times when my joints stay where they belong instead of popping out or grinding just along the edge of the socket. Swelling is minimal, and the knots in my muscles are comparable to what one would expect to find after working out or sitting in certain positions for too long. There are weeks between seizures. My migraine injection is doing its job. The calm is remissions from the various storms that threaten to bring me down. Remission is so so good.
When remission comes–from one thing or from all of them–I celebrate. On good days, I don’t use my wheelchair. On good days, I cook and bake. On good days, I lay out by the pool. On good days, I visit with my friends. On good days, I can be active with my family. On good days, I go to my brother’s lacrosse games. On good days, I work and play with my Service Dog. On good days, I dress cute and do my make up. When remission comes, I can remind myself that I am still a whole person with a full life.
Today the wind is howling and the water is white capping. It’s too cold for me to even sit outside, and my pain is at about an eight. There has been blood in my stool off and on for about three weeks now–most likely due to a lesion in my small intestine from a Crohn’s flare. I’m having trouble digesting solid food, which means bathroom trips within fifteen minutes of every meal I decide looks good enough to eat. There is pain everywhere, but like the trees that are leaning with the burden of the wind, I am bearing it instead of breaking. There have been many stretches in the last few days when my migraines have kept me hidden in bed, tucked away like the giant waves are keeping us from leaving this island. We get used to the constant gale, and then there will be a sudden gust of stronger wind that blows in like a seizure. My mind thinks this metaphor is clever. The wind storm is flaring, and so am I.
A few weeks ago, the wind came up with a strength that knocked over a pine tree that had been standing on this island for as long as anyone could remember. The speed of that strom’s gusts–it’s pure strength–was enough to create a mess of debris that we are still cleaning up weeks later. I am all too familiar with the flares that come on strong enough that I can’t fight them off. They land you in the hospital or make it so that you are truly bed ridden. The people around you have to help pick up the pieces of your life that have fallen apart around you. The flares that attack with this much strength are the storms that blow shingles from the roof and bring down hundred year old trees and rip boats from docks or even docks from shore. They disorient and mean recovery time that could last days or months before all evidence of the storm has been patched up.
Flares are hard. Flares hurt. I don’t want to move, and I don’t want to do anything, and I don’t want to talk about it. I keep moving, and I keep doing anything that I can power through enough to do, and this is me talking about it so maybe people can understand.
The wind outside is awesome, and honestly, so is my body.